Grand.

[ellenmillion]

My mother's been diagnosed with fibromyIforgettherestofit...

I know several of you lovely readers suffer the same - any tips? She's done her Internet research, and is well-educated, so probably doesn't need any of the obvious info, but any personal experiences/problems/solutions to share? Also, is it genetic?

Comments

[ciri.livejournal.com]

My friend yaaren has it and she said cutting gluten from her diet has done wonders for her. I wouldn't know she had it if she hadn't told me, she's very active in her life.

[fireborn.livejournal.com]

*laughs* Oh god. Um.... I'll try and hit this post again tomorrow, after I've gotten some sleep and have a prayer of tackling it. Though some idea of her life situation could help....

(Fibromyalgia. Spelled like it sounds.)

[fireborn.livejournal.com]

:looks over the rest of the comments and snorts softly:

You still want my advice/thoughts? Because they're... rather different than what has been presented here so far.

[ellenmillion.livejournal.com]

Absolutely. I can't know what's going to work best for Mom - it's best to have everyone's experiences.

[pers1stence.livejournal.com]

I may be misremembering, but fibromyalgia IIRC is one of those disorders that often go undiagnosed and not all doctors really "believe in it." One of the gals in my dorm had it, and while there were difficult times, she still managed to lead an active, full college life.

[rendergirl.livejournal.com]

Ok Fibromyalgia is what my sister Deni has, among other things. It affects women differently, and what works for some, doesn't work for others. For my sister, it manifests as pain in her hips and legs, and lower back. Tell your mom to get one of those heating pads that she can put in the microwave. We have one and it's called a "Bed Buddy", and my sister uses it almost every day. Also, people with Fibro often times have really sensitive skin. My sister goes through periods where she can't stand anything on her skin, especially her legs. She has a lamb's wool pad that she puts on her bed and she lays on it. It's really soft and it soothes the skin and many Fibro people love it. Also she uses a cream called "Blue Stuff", it has emu oil in it, and you rub it on like Ben Gay, only it works better. There's tons of info she can get off the web, including Fibro support web sites and chat rooms. I hope your mom can use some of my suggestions! :)

[frigg.livejournal.com]

I'm sorry to hear that, Ellen. These past weeks have been really hard on your family.

My friend, D, has it. She says that one of the most important things for her to do is to take a walk every day. If she doesn't, then her symptoms (pain) worsen. She's on pension because of the fibromyalgia, but leads a fairly normal life otherwise.

I don't believe it's genetic.

[dreamburnt.livejournal.com]

My BF's mother has it; he says there are a bunch of online sites (recommends WebMD). Topomax and Wellbutrin are things that help (anti-seizure medication/antidepressant). I don't think it's genetic. A significant number of doctors don't really believe in it as a disorder. The main symptoms seem to be pain and tremors.

Best luck to you and your mom.

[jenelycam.livejournal.com]

Yeah, I have it. I experience a LOT of pain from it. And it seems to worsen when I get sick, or weather fronts come through. I seem to feel better when it's dryer and warmer. I don't think I could live in Alaska O_o!!! I'd be a wreck. It can affect your mind too. I tend to be even more forgetful than I used to be. I can go to do something and forget what I'm doing as I'm going to do it.

It does seem to affect different people in different ways. And there are those who don't think it's any big deal. I guess I do, because I'm 30 and I feel like a 90 year old woman in body and mind, and a teenager attitude. ;p

I'm not as active as I used to be, but that may be some laziness on my part. I try to walk with the kids and play with them, but some days I just can't do it.

Here's a site I found that had some helpful things to help with different aspects of the disease. http://thescotts.topcities.com/fibromyalgia2.html

[maggsish.livejournal.com]

I have an aunt who suffers from fibromyalgia (spelling? *S*), who also has classic symptoms of Celiac Disease (An intolerance to certain proteins found in wheat, rye, and barley.), which has genetic influences, and runs on that side of the family. While she has refused to be tested for Celiac, she has found that certain dietary changes have helped her condition a lot. I myself was diagnosed with Celiac after talking a doubtful MD to do the test, and the problems I was having with my joints/wrists/etc. have improved with the lifestyle changes I have made.

By the way, there's not been enough research done to indicate a 100 percent, definite link between fibromyalgia and Celiac, but there is a definite relationship in many cases...I don't know if this is something that would help your mom or not, but here is a website with tons of helpful links and information: www.celiac.com

or more specifically:

http://www.celiac.com/st_main.html?p_catid=7&sid=91hH9H1ExMM44Ly-26105250696.d1

I hope your mom finds the best treatment plan possible for her lifestyle and overall medical condition.

Smiles,
-M